Archive for September, 2009

Brooke, Gracie and I drove 20 hours this past weekend in the name of cancer research. The occasion was a walk/run in the northeast corner of Pennsylvania where over 20 other cancer organizations had convened to wage this war we know as the cure. There were t-shirts, banners and speeches. There were politicians, experts and parents. Yet, from my perspective, all that mattered were the three children that joined us that afternoon.

One was in preschool, another in kindergarten and a third in third grade – and they were all fighting brain cancer. All at different stages of the disease, to them this was a celebration and I understood. The speeches could wait. Still they continued. Parents took to the stage to talk about the children they lost, politicians came to the stage to tell everyone of their heroes and supporters took the stage to reinforce the importance of funding. And in their wake remained the children, left to listen from the picnic tables in the rear.

I feared that they would inherit our tears, carry our depression, and listen to our words. And in the end, they were the only ones that mattered. After all, they were our hope. To them, cancer was no more than a “bump in their head”. Next year it would be a distant memory. There were football games to play, pools to swim in and flowers to pick. And they would get better.

A half an hour later, the speeches ceased and balloons were released. Yet these children and I were too busy to notice. We were too busy collecting acorns from the ground to race down the picnic table we’d propped up hill. And I never won even one race. Adults around us came near and watched as they dabbed tears from their eyes, pretending it was the allergies or a cold. I knew it was the speeches. They were losing hope while we were talking about tomorrow.

Somewhere it made sense. Three years ago, Elena taught me to dream. She took me to the Eiffel Tower, convinced me to ride in a horse carriage

and showed me how to dance. She didn’t need speeches about hope, about a cure or determination, instead, she led us by example. Just as those three children did for us all that very day.

It’s about the children and I had forgotten. Thankfully they were there to remind me. I pray they are there to remind me again next year. Speeches can wait, they can’t.

I still sign “thank you.” The tips of my right hand briefly touch my chin and politely curtsy to my side once again as I mumble “thank you” to the waitress. By now it is involuntary. For nearly three years sign language has been part of our lives. And now, even without Elena, the gestures remain.

As she lost her voice for the second time after radiation and we knew it would never return, both Brooke and I scrambled to find another way to communicate. For days, Elena would talk with her eyes, motioning us to adjust a pillow, put the cap on fish food and to get something from the refrigerator. Most often it was about the refrigerator as food became a way of life under the influence of steroids. Sometimes we would guess correctly. Most times we’d be wrong.

One night after fighting for hours to understand her breakfast request for the next morning, we decided to turn to sign language. And so packing up the car we went to the local bookstore and bought everything on the shelf that we thought might help. Brooke read by the dome light of the car as we drove home, teaching Elena the signs for “bathroom”, “ice cream”, “I love you”, and “proud”. “Thank you” was to come later, as the steroids affected her mood and we desperately wanted her to return to the considerate loving daughter we’d always known.

That week the lessons continued. And before long, we exhausted the simplified pages of the “Children’s Sign Language” book. But there was more to say. We didn’t have signs for “pain”, a sign for “goldfish” or a sign for “tired.” And again the eye motions returned. We tried to make up our own with two hands, but as her right hand grew week and the paralysis set in, we were once again left without words. All that would remain would be the tickles and the sweet smile I remember still today.

I still remember the sign for “proud”. Almost instinctually I follow it with the sign for “dad” as I would motion to Elena from her bedside during her bi-weekly chemotherapy treatments. Sadly this, along with “thank you” are the only ones I have left. I can’t spell the alphabet, sign for “ice cream” or even remember the sign for “drink” and I guess that’s for a reason. With every “thank you” I remember Elena and the lessons she left behind as I once again I touch my chin.